#i got those when i had really bad issues with chronic pain and fatigue and needed to just crash sometimes

[barksbog]

he really is the hardest working collie out there

#i love him #he got big pillow and it's made him so happy #human sized folding mattress too #i got those when i had really bad issues with chronic pain and fatigue and needed to just crash sometimes #but i'm doing better now and worst case i just cuddle up there with him

[crimeronan]

can you talk about chronic illness themes in greywaren pretty please I’m so curious what you thought about the conclusion or lack therof

i've had this in my inbox for weeks and keep thinking about it and like. on the one hand i want to answer on the other hand i don't enjoy spending a lot of time talking about things i don't like. but i think i've nailed down the broad shape of my grievances wrt chronic illness real quick, so here's this and moving on

i think the first 2/3rds of greywaren were perfectly suited in tone to what dreamer trilogy had set up and there were Really good questions raised about matthew and jordan and declan and ronan and hennessy, i also think hennessy's arc (and the ronanessy culmination) was the only one that felt like it actually followed through on the chronic illness themes that had been set up. i was very very interested in jordan's thing about the act of creation keeping her awake, there's some good metaphors about artist survival there, tho ymmv. i know a lot of people with chronic fatigue aren't fond of it bc making art is Tiring and sometimes you Cannot Do It but tbh what i didn't get from jordan i got fine from hennessy so. that's all fine. then the last few chapters of the book take a hard transition into "now i have to wrap this whole universe up prettily to avoid rude tweets" and that apparently meant not having any messiness on the page, which is a shame because complex nuanced messiness is where stiefvater's writing most thrives.

adam and ronan's resolution was boring they didn't fix any of the things that were a problem wrt ronan's chronic illness and adam's Everything, joining souls in space is stupid, they already KNEW they loved each other, the love was not the PROBLEM, the problem was that they were on fundamentally incompatible life paths and loving each other DOES NOT MAKE THOSE COMPATIBLE.

declan and matthew's resolution was nonexistent, i'm actually Very Okay with the whole "matthew walks home" plotline but i needed his POV of that journey and i needed WAY more on the page from declan at the end there and i needed WAY more than "i can be fine relying on you guys bc bryde told me i should" when declan's treatment of matthew up til then had shown NO indication that matthew can EVER trust him.

bryde is the sickest person in the series and his end was far too ambiguous for my taste, especially when up to that point he and matthew had been interrogating the EXACT themes i'd wanted to see about what it means to be a dream and to be this kind of chronically ill. like we were almost somewhere there and then we just dropped everything about.... everything.

meanwhile adam is torn apart on the astral for days and days and days but wakes up fine and then bam, we flip forward 4 years and he's normal and there's no indication of any potential issues even tho there were themes traced all the way back to cdth about him and hennessy having similar chronic illnesses (thru lace metaphor). the epilogue firmly establishes that everyone is Better and that they all have stuff Figured Out Now and while i like knowing where people end up, i don't like a resolution that boils down to "and now we never need to struggle again."

i did not like greywaren's takes (or lack thereof) on chronic illness because it felt like we can't exist in a "joyful comfort read" because chronic illness is Bad and the author wants to avoid nasty tweets about doing Bad Things to characters.

i want to know what greywaren would have been if its main purpose had been to carry thru the series themes instead of to make trc fandom shut up and feel pleased about their blorbos and move on. stief talked about how she had to do a lot of rewriting with the dreamer trilogy up through greywaren bc she was so angry about being sick and. i want the angry book. i want the drafts that weren't pared down and rearranged and cut apart and spliced together to appease every normie person who's never felt constant pain or fatigue a day in their lives. the first two books were for me and will always have been for me, they are The Most Personal Books I Have Ever Consumed, but in order for greywaren to be for me, it would have had to Not be for certain people, and. well.

greywaren is for everyone.

so. shrug emoji. i guess.

#replies #greywaren #greywaren spoilers #greywaren negativity #another post that is NOT for stief's eyes do not tweet this at her or so help me god #greywaren meta

[stargazer-sims]

Victor you find a genie and are granted three wishes, what do you wish for and why?

Thanks for the ask, @dandylion240 !

We'll get Victor to answer this in his own words, becuase his narrative voice is actually one of my favourites among my OCs.

______

Victor: So, I guess the whole 'wishing for infinite wishes' thing probably isn't allowed, right? I think that's what my Uncle Stephen would call a loophole.

This is actually a kind of hard question, because a lot of stuff I might've wished for in the past isn't stuff I'd wish for now. Like, I'm pretty sure if you'd asked me this, even a year ago, I might've wished for my dad and Caroline to be alive. I'm not so sure I'd wish for that now, at least not for Dad. Yeah... part of me is always going to be sad about having to grow up without him, but I think I've finally started to come to terms with everything that happened. If Dad was still here, I think my life might've been drastically different, you know? Julian's been a great support for me, and even though neither of us have ever thought of it as a father-son relationship, I guess it kind of is, and I'm happy he's going to be my official stepfather soon. He's my mom's soulmate, and I mean... how could I wish for something that would keep my mom from being with her soulmate, now that I know what it's like to be with somebody who's literally the other half of your spiritual matched set?

Okay, so I guess my first wish would be for Caroline to still be alive. She was only two when she died. She never got to experience anything much, and it's not fair that she didn't. Plus, I've seen what it's been like for my cousins and friends to grow up with siblings, and I know I would've loved that. I think about Caroline a lot, and I often wonder what she'd be doing now. I wish we'd both had the opportunity to find out.

For my second wish, I'd wish for Yuri to be better. Like, totally cured of his chronic illnesses and everything that goes with that. One of the hardest things for me is to know that he's suffering, even a little bit, and that there's really nothing I can do about it. I don't mind taking care of him, but I wish it wasn't necessary. He's in pain nearly all the time, even though he tries to hide it, and that breaks my heart. All of his medical issues have held him back from doing a lot of stuff that he might otherwise have done, and I feel like he deserves more in life than just a steady cycle of flare-ups and remissions, medication, pain and chronic fatigue. Sure, if he was well, our lives would be a lot different than they are now, but I could live with that. All I want is for him to be happy and not hurting.

The third thing... that's gonna be just for me. I'd wish to have a chance at either an Olympic gold medal or a World Championship gold medal. Like, I felt as if I was so close this year, and then my accident happened, and I'm probably never gonna snowboard again, much less have a shot at anything international. I wanted to make the World Championship so bad, you have no idea. So, I'd wish for that; getting into the Snowboarding World Championship and placing in the top three in at least one of my events.

Honestly, I know all that stuff is impossible. It's interesting to think about, but also kind of depressing because I know it'll never come true. I think I just need to work on figuring out some new goals and working for those. I have no clue what I'm gonna do with my life now, but I'd rather be doing something than just sitting around wishing for stuff.

#sapphire answers #oc ask #victor nelson #stargazersims

[reptile-garden]

I’m really fucking annoyed with Drs. I’ve been having abdominal pain since fucking August. All the test are negative. Blood work shows nothing, Ultrasound and Ct are normal besides two slightly inflamed lymph nodes in my abdomen.

Dr sent me to the surgeon, surgeon was like “well I can’t remove those lymph nodes with out major surgery, and I don’t think you need that, but I think it’s either celiacs, fibromyalgia(since fibro can start with pelvic pai ), or  endometriosis, go back and talk with your OBGYN and PC.”

So I did, OBGYN is like “naw not endometriosis. Here’s a referral to pelvic pain and PT.”

Got tested for celiacs and surprise surprise it’s negative. I had already done a diet trial long ago to rule out things. They want me to redo a h.pylori test but I can promise you that’s negative too

PC said “Oh no it’s not Fibro, fibro doesn’t cuss abdominal pain, only joint pain. If you’re having that’s schedule an exam”

Bitch in my previous emails. Back when I asked for an ANA I listed my symptoms, and chronic pain in my joints that comes and goes was one of them. Thankfully that was negative too

My knees will sometimes hurt so bad I can’t sleep, sometimes it’s both sometimes it’s one. It comes and goes, heat and a weighted blanket help. It’s also the same with my ankles. Same with my right arm, both the wrist and elbow, but I always assumed that was from the surgery I had. My left arm often aches as a whole and the joints in my wrist and elbow recently started to ache on and off. Both my hips will randomly ache and also cause me to not be able to sleep on what ever one is aching. My lower back also randomly decides to ache and make it hard to do my job. Heat and compression or a weighted blanket is the only thing that helps at all.

My lungs randomly decide some days they want to hurt when I breath (always assumed this was long term covid issues). My stomach decides randomly with out rhyme or reason that it’s going to cause me to want to puke for no reason, it’s not the reflux that the GERD causes it’s straight up nausea.

There’s also the chronic fatigue I’ve been fighting for almost a year now, a new nicer bed helped some.

I’ve been told “oh it’s chronic pain, sorry we can’t help.”

I got in with the specialist for pelvic pain in fucking January, no OTC pain killers do anything besides take the edge off and then sometimes hurt my stomach, so I really don’t take those, they tried offering narcotics but I quickly shot that down as post surgery I got Vicodin, was supposed to take 1 tablet like 2-3 times a day, can’t remember exactly how often, but I took a 1/2 tab once and reacted so badly I would rather be in pain than deal with that shit again. Meloxicam/Metacam makes me wanna puke, gabapentin gives me vertigo. So I’ve been treating with heat and every now and then taking  acetaminophen.

So tell me once again, how nothing is wrong with me since all my test are negative.

Honestly I think I’ll just wait for the specialist apt at the end of January instead of dealing with Drs who tell you your symptoms match then tell you no your symptoms don’t match. I had one normal Dr tell me it could be fibro while my dr was on vacation, but it would be better to talk with the dr who specializes in the pelvic pain. Only to have my dr when she was back from vacation to say no it’s not

#chronic pain #chronic illness #fibromyalgia #endometriosis #I just want answers so I can figure out how to keep the pain levels lower #I can’t remember a time when I wasn’t in pain #apparently the normal amount of pain to be in is none #non animal things

[olena]

Long COVID Experts: U.S. Government Needs to Do More | Time

For many people who are done with the pandemic and the caution that came with it, a maskless supermarket may seem like a sign of progress. But for those with an intimate understanding of Long COVID, it feels like a bad omen.

Dr. Ezekiel Emanuel is used to feeling like the only person in the country who still cares about COVID-19. He ignores the side-eye he gets for wearing an N95 mask at parties—a self-imposed policy that makes him “look odd” but kept him safe after a recent work dinner turned into a superspreader event. The oncologist, bioethicist, and professor at the University of Pennsylvania provides each of his students with an N95 and runs four HEPA air filters during lectures. He rolls down the windows when he gets in an Uber and goes hungry on planes so he can wear his mask the whole time. He’s given up one of his favorite pastimes—dining at restaurants—even now that many people don’t think twice about eating indoors.

Emanuel, 65, takes these precautions even though he’s vaccinated and boosted and thus well protected against severe COVID-19. The acute disease doesn’t scare him much—but what could come after does.

“The only thing that’s preventing me from leading a normal life is the risk that I’ll get Long COVID,” Emanuel says. “I can’t say why people aren’t [reacting like] their hair’s on fire. This is a serious, serious illness.”

...

By the CDC’s own estimate from June, one in five U.S. adults with a known prior case of COVID-19 had symptoms of Long COVID. Having COVID-19 also raises a person’s risk of developing chronic conditions including heart disease, asthma, and diabetes,

...

Long COVID can take many forms, including exhaustion, cognitive dysfunction, neurological issues, and chronic pain. People can develop it whether they’re young or old, sick or healthy, vaccinated or not. And while some people get better in a matter of months, recent studies and many patient experiences show symptoms can last years. There is no known cure for Long COVID, and the only way to prevent it is not to get infected at all.

...

Many Americans welcomed the return to normalcy. But to McCone, 32, that approach is “a crime against humanity,” given what we now know about Long COVID.

...

McCone got sick in March 2020. COVID-19 knocked him flat. ... More than two years later, McCone barely leaves the house, except for medical appointments. He still has severe fatigue, chest pain, shortness of breath, and nervous system dysfunction. He can’t work because of his symptoms, and his partner has become his caretaker. His symptoms got even worse after catching COVID-19 again in September 2021, so he’s “petrified” of getting reinfected—a fear he wishes more people shared.

...

Hannah Davis, a machine learning expert who began researching Long COVID after her own diagnosis, also got sick in March 2020. Davis has testified about Long COVID before Congress and advised federal health officials about the condition. She says those experiences have shown her that health officials understand that Long COVID is a substantial problem, and that, while vaccines reduce the risk of developing it—by some amount between 15% and 50%, studies suggest—they are not failsafe. The U.K.’s Office for National Statistics recently reported that roughly 4.5% of triple-vaccinated adults developed Long COVID after being infected by Omicron. But the government doesn’t seem to want to dwell on these scary stats, Davis says. “It really looks like it’s being hidden intentionally,” she says.

Davis believes that’s because the Biden Administration leaned heavily on vaccines as a ticket out of the pandemic and is wary of walking back that messaging now,

...

Some Long COVID advocates and scientists have called for an initiative like Operation Warp Speed—the Trump Administration program that quickly yielded multiple effective COVID-19 vaccines—for Long COVID treatments. But the NIH hasn’t built anything of the sort...

Dr. Eric Topol, founder of the Scripps Research Translational Institute and a prolific parser of COVID-19 research on Twitter, says the NIH is doing good research on the underlying science of Long COVID, but he’d like to see more trials focused on treatments. “You need to do both, because we can’t wait another year or two for the biology to be better defined,” Topol says. (The NIH says it will begin treatment-focused trials this fall...

...

A tremendous amount of Long COVID research has been published in the last two years, most coming out of independent laboratories, Putrino says. From this work, scientists have found multiple possible explanations for Long COVID symptoms: SARS-CoV-2 virus lingering in the body, abnormal immune system activity, reactivation of other viruses previously lying dormant, tiny blood clots throughout the body, and more. These disparate findings suggest that there may be different root causes or subtypes of Long COVID, which means all patients might not respond to the same therapy. But each one suggests a possible path to treatment worth testing sooner rather than later, Topol says.

...

Journalist and author Katie Hafner, 64, was one of the unlucky people to develop Long COVID after being vaccinated and boosted. She got infected in May and was left with significant fatigue and brain fog. Her Long COVID symptoms were on the milder end of the spectrum and have improved with time, but Hafner says she can still manage only a few hours of work per day and has to carefully monitor her physical and mental energy levels. Her anxiety has also escalated since getting sick.

Hafner’s husband is Dr. Robert Wachter, chair of the department of medicine at the University of California, ...

[Who, by the way, publicly shamed her: https://twitter.com/Bob_Wachter/status/1522799251914313728

She got sick shortly after.

Now Bob says:

“If it turns out that it markedly increases the rates of some of the biggest medical hazards we have in life”—including organ failure, heart disease, and dementia, as research currently suggests— “the toll of that over years and years will be tremendous,” Wachter says. “I don’t think [the CDC has] done a good job explaining that at all.”

...

Experts say there is more that can be done, even before new therapies are discovered or developed. To slow transmission and thus lower rates of Long COVID, Topol says the CDC should tell people to isolate for longer than five days after getting infected and campaign harder for people to get booster shots. Emanuel, meanwhile, would like to see better communication about which masks protect wearers from infection; respirators like N95s are more effective than surgical or cloth masks, but many people still walk around in droopy blue surgical masks. Public indoor spaces, like restaurants and schools, should also have enforceable requirements for ventilation and air filtration, given the virus’ ability to spread in the air.

...

A return to mask mandates would also be a good step, Davis says. But even if none of those changes are enacted, she says the government should at least emphasize how common Long COVID appears to be and that it can affect vaccinated people. She fears many vaccinated people think they’re in the clear and can’t get Long COVID, because the Administration has sung the shots’ praises so much. “We’re just drowning in this sea of misinformation that is not only causing people to poorly think about their own risk, but also putting other people at risk,” Davis says.

Those with Long COVID often say they feel like they’re screaming into the void, trying to get through to people who either aren’t aware of or don’t care about the condition and the possibility it could affect them, too.

For many people who are done with the pandemic and the caution that came with it, a maskless supermarket may seem like a sign of progress. But for those with an intimate understanding of Long COVID, it feels like a bad omen.

#covid #long covid #time magazine #the pandemic is not over

[fedorahead]

random thoughts

maybe the hypermobile audhd depresso fibro fatigue body wrong brain broken group of people is all one evolutionary branch. we get a lot of shit done that people without these weird clustering disorders can do, and most of us are still out here existing in some way, affecting the world around us even if it isn't always societally valued. i don't want to be lumped into some tribe of these people because, like all people, the majority are cunts. but also, it is interesting to see how often all of these things are comorbid and the real defining difference between all of us is whether we believe each others' tales of their experiences.

i hate people in general, why wouldn't i hate people who have similarities to me that have rendered them some degree of also alienated and outcast? like, maybe it's all one systemic difference from people whondon't have all these issues, and that's why they're popping up more and more. in a society built for people with all these things, very few of us would be rendered disabled. every human is protected from the sun by clothing, and can burn without any. why wouldn't the next step be people supported by orthotics? it's inconvenient but if shit were readily available to accomodate our needs, we largely wouldn't be as miserable or unproductive. if all of society had all the issues this group of people have, we would be accomodated for and maybe thrive. because once you address the nerfs, there are biological advantages to, say, hypermobility and reaching weird angles, autism and the way thoughts are less restrained by social expectation and traditions, the clarity and focus depression can grant, the safety hypervigilance *can* bring, the firsthand empathy feeling pain regularly (again, if it were accomodated) can extend to others, the hyperfocus and creativity adhd brings to the table.......... if we built a world where this shit were expected and made that world more comfortable for everyone struggling with it, we could do some crazy cool shit.

so maybe it's not about whether this person actually has xyz diagnosis or struggle, it's about whether or not they're an asshole and deserve to be in pain all their life. (the answer would sometimes be yes except that people weaponize that struggle and use it to get ahead while stepping on others, too, but also. those people would probably not change and would do the same shit even if it weren't chronic pain they were weaponizing)

anyway, maybe lots of people really do have all these struggles and we're in a turning point in society where they are accomodated and accoladed in some people (often shitty ones) nd punished in other people, and that's just a facet of society rather than a sign anyone actually has anything wrong with them.

the problem is the lack of empathy people weaponizing these traits show to others who are struggling, often more than them. because it's easy to be beloved and pitied when you're cute and your whole mask is some chibi waving and cheering "ganbattemasu" and making a fist in determination, but maybe you don't really have any room to speak on the person whose mask is brash and slips during total meltdowns and gets a bad reputation for both sides. maybe it's the divide in the tribe between the autists and the non-autists who are all struggling with something? but people genuinely find autists offputting even when we're not doing anything wrong, and if you haven't got that experience your entire life, you're not gonna estimate the capacities of those who have. so you can't say "x is easy" or "anyone can do y" because the barrier, the social and traumatic barrier of being an actual alien, is nonexistent for you and you can't perceive where all its tendrils reach. but maybe it's not autistic vs allistic. maybe it's empathy vs very little or no empathy.

i dunno. i just wish people would stop being cunts, and also stop acting like their capacities set some standard for others. i can juggle. it's easy for me to juggle very poorly. i can teach kids to juggle, the very basics, in a day or two. is it fair for me to exclaim "i lost the use of my hands in 2015, and worked my way back and can juggle now, so joint issues aren't a real barrier and anyone can juggle if they try"? or is that wilfully (or otherwise) ignoring the obstacles that others have to it that i lack (like the fact that i was taught in childhood and have practiced on and off for 20+ years)?

it is annoying to watch people have less obstacles, do better, and get told how strong/hardworking/determined they are though. like the beaten down of us are there for a reason, not just through some personality flaw. you never see the battles others are fighting in private or whatever.

i'll also add, in terms of social treatment, being perceived as a cute girl and wearing a mask of determination even while you spiral is absolutely the easiest combo to get support. people who don't have that combo are fucked. i can say that pretty solidly having experienced both sides lol

#rambling #ranting #audhd #autism #fibromyalgia #disability #disabled community #controversial opinions #misanthropy #alienation #ehlers danlos syndrome #hypermobility #depression #anxiety #hypervigilance #i hate everyone #societal expectations #accomodation #adhd #gods i hate tagging things #i want to cover all my bases #i don't even know why #i hope nobody takes this the wrong way #freeform thought #trying to drop my mask #but terrified of social rejection #ostracization #disability politics #fakers #i love you goodnight

[thurisazsalail]

Today I was in a long line, telling a much older woman that it might be time to get a rollator. Those are like walkers kinda, but they got wheels and a seat. I have a bad ... everything, but I kept it to "bad back" and it's hard to stand in lines. She has a lot of leg pain. We agreed that every company is cutting staff to save money, so lines might be a lot of waiting with just one cashier. A rollator might bridge the gap for now. A chair anywhere we need it!

Of course I let her go first. I'm able to tolerate pain to the degree the docs are worried that I'll have another seizure from it before I notice. I fractured my jaw in Nov and by Dec got so annoyed with the pain under one specific tooth, i went to see a dentist. I thought I'd damaged it at the root. Lol found out after i got into a specialist about the fracture... in early May. *that* kind of pain tolerance. Thank you, autism! But I didn't think she could take it, having to stand longer. She wanted me to go ahead but I really did have ~10 things + coupons, and she had maybe 2.

Lesson 1) OTC aids like rollators, shower seats, feet scrubby thingies, etc. are for EVERYONE.

You want a chair no matter where you go? Jus make that happen. Collapsable short stool, rollator, whatever. DO IT. My partner won't get a shower seat because he Isn't Old. ... is there someone checking ID at the curtain? What's going ON back there? Sometimes after 10 hours of work, a person wants to sit down while warm water pours over their head. A shower seat is like $30 at walmart and they're collapsible. Anyone can have one. There's no ID check.

I started thinking of everything I had to do the rest of the day, everything I'd already done to help me make sure I checked all items off the list (I get the car ~2x/wk; I need to do EVERYTHING on those days!) Then everything I have to find energy for tomorrow with chronic fatigue + Too Much today... and I thought, "it's too much. I just want to die."

But wait. DO I? Do I still just want to die?

Let's be accurate when naming the issue:

- I have EDS + it makes everything So Much Harder, esp when chronic fatigue is at play

- I have done a LOT from 9am-2pm

- I still had ~4hrs of work, minimum, today. There is no one to take it over for me.

- Tomorrow, I have to start at 8am and have a long list of Things that a healthy person might struggle with

- this is so overwhelmingly insurmountable, I can't begin to say

- i don't actually want to *die.* If the dishes were magically done + put away, the kitchen baseboards were scrubbed of all the drywall dust from pest control, and the floor mopped... things would actually feel somewhat relieved. Those are big tasks for me since they require physical exertion, standing, accurate finger/hand dexterity (I drop + break dishes a Lot.)

I don't want to die. I want fewer hard things to do. I want more accessibility.

I'm still angry that this body betrayed me. I was *supposed* to have FREEDOM and instead, I'm constrained by needing someone to lift the damn cat litter for me even though it's only 10bs and I used to carry 50 on an arm.

I have to make damn near everything from scratch because almost nothing is a safe food now. Everything gluten free is now ALSO vegan, but vegan food tends to rely on PEAS for protein... and I can't eat legumes other than peanuts. AND thanks to Americans and their obsession with sweets, everything that used to have (too much) perfectly safe sugar now has migraine + seizure-inducing aspartame in it! 0 calorie!!1

So. Besides fucking rice and straight chicken, nothing is safe. Unless... I make it myself. But I *can't* because I have to have energy to cook, brainpower to cook accurately, physical stamina to cook and really focus to have the dexterity, then not burn or injure myself during cooking (i do this almost every day.) THEN see all these things and ask "How do I clean up after?" GOOD QUESTION. MAYBE IN 48 HOURS, I WILL KNOW.

I don't actually want to die. I want this body to work again. I want accessibility. I want some safe freaking food that I didn't have to hurt myself to make. I don't want to have to MAKE everything besides Cheerios from scratch. I could use some assistance in doing more things that are hard for me.

I don't think I'll ever see most of that. The body working sure as won't happen.

So I might look into how useful I find a rollator, instead. And try some other flavours of cheerios.

The search for fake sugar-free whey protein that also serves for meal replacement and doesn't have peas in it continues.

[thebibliosphere]

ADHD reward system? Please tell me your secret!

My therapist has been helping me find a reward system that works for me, and as it turns out, gold star stickers are really helpful for making me feel like a tangible goal was met, and helps give me that sweet, sweet dopamine release that comes with completing a task, something which us ADHD’ers really struggle to achieve and are already coming at from a disadvantage with our brains regularly not producing enough “happy” hormones as it is.

It was supposed to be “a sticker for every time you finish a chapter”, but after some revision, my therapist said that was too tall of a goal, and that I should pick something smaller. So instead I now get a star every time I finish a 500-word milestone, placing the sticker in my writing calendar/journal thing that I use to keep track of my writing, and ironically, I have started to produce more work than when I was stiving for one chapter a day.

To give you an idea of how staggeringly effective this has been for me, I’ve written over 30k of original fiction in the last week. (75k total if you include my social media and blog stuff, which I currently do not but likely should.)

So this is what it looked like when I was attempting to do a chapter of edits and revisions a day during the month of December 2019 (note: I was supposed to start this in Nov, so you can see how well that worked out for me lol):

ID: A calendar showing days of the month with a shiny star sticker showing a completed task.

And this is what my writing journal looks like now that I’m doing a star for every 500 words:

ID: an image of a handwritten journal with the dates mapped out, followed by a shiny star sticker for every completed 500-word milestone. There are 65 stars in total for the month of January 2020. It’s also tinged by a green light cause I’m doing a chronic pain experiment, so far with positive results!

So as of today, January 8th, with ever star = 500 words, then 65*500 = 32500 words totalled in 7 days. This does not include, like I said, my social media output where I am far more productive, this is just my fiction and some editing work for friends.

(Which side note: this is not to flex, or to say that others should be able to achieve this level of output. I am a professional writer, this is my main job and only source of income. And also, I was forged in the fires of understaffed editing hell where we would be expected to churn out 100k+ a week in edits and revisions to keep on track. I have the time and a learned skillset I have spent years amassing to be able to do this and am working towards a rigid deadline. I simply have not been healthy enough in a long time to manage it, and am finally working my way back up to speed after years of illness. Don’t look at this and think, “I’m not achieving enough”, every victory no matter how small is worth celebrating. And I say that with the utmost sincerity, as someone who spent most of the last 2-3 years unable to get out of bed.)

I’ve also started using it to help keep track of bills and chores around the home. So every time something gets done/done on time, whoever completed the task gets a star on the calendar. This includes Oppy the Not-A-Roomba, who does a very good job of taking care of the house on a daily basis:

ID: an image of a chore calendar denoting various tasks that have been marked off with a holographic silver star sticker, including our robot vacuum who does an excellent job and deserves all the stars. (Our names got blurred out cause ETD doesn’t want his real name out there in the world, so that’s what is blurry.)

This system is useful for several reasons, the primary one being a sense of achievement and continued motivation, and the second, to allow you to review each month to see where you are doing well, and where you might otherwise be struggling.

For example, if I have a bad day for writing or decide to take a day off, I write that down in the calendar rather than leaving it blank, so that I have a record of what went wrong (or right, if I am electing to self care that day and take a day off) and how my overall progress is doing.

In terms of house stuff, this has been especially useful for ETD and myself, as it shows us where we are managing to do a good job with the house, and where our executive dysnfunction issues really trip us up and where we need to make improvements. And I don’t just mean in an “I should try harder way”, I mean you have to actively sit down and be like “hey! What is preventing me from completing this thing” and trying to figure out effective ways to either get around it or resolve a larger issue at hand.

So for us, the biggest thing we tend to miss is doing dishes after dinner, meaning we get left with a pile-up of dishes to deal with first thing in the morning, and my ADHD can’t handle that. It won’t let me eat until I’ve cleared all the mess, but I usually don’t have the energy to clean up if I haven’t eaten, so it’s this awful cycle of ineptitude. We’re doing better with the star reward system, cause it’s showing us our progress loud and clear on the fridge door, but we are both usually so fatigued and exhausted by the end of dinner that doing dishes is just one thing too many for our mutual disorders. So, the solution for this would, of course, be a dishwasher, cause if we had one of those, we could load stuff in, turn it on, and let those dishes get done while we go to bed then put them away in the morning. We can’t afford to do that right now, and we have other appliances we need to buy/replace before we can do that (still don’t have a tumble dryer, or a washer I can access, rip) but it does give us a tangible goal to work toward, and also, the motivation to keep on top of things because it goes from “an endless task with no end in sight” to “there’s a solution for this, we can manage a while longer.”

Now you could be saying, but Joy, I’m an adult! Surely I shouldn’t expect rewards for completing every day tasks that I should be able to do?!

To which I say, neurotypical people get rewards all the time and get an unconscious dose of dopamine/serotonin from their brains every time they complete a task. They’re playing the game of life on easy mode, the gold star is your achievement for completing it daily on Nintendo 99 hard mode. IF THE STICKER WORKS, TAKE THE STICKER

YOU’VE EARNED IT.

#kaitokenji37 #adhd #adult adhd #adhd reward system #life hacks #adhd hacks #personal #okay to reblog

[probably-enjolras]

r.e. disabled les amis headcanons: omg please add yours

yay someone wants to hear mine! some of this will be projection on my part. i’m disabled myself, i need a cane to walk because of a condition called Amplified Musculoskeletal Pain Syndrome (AMPS) which is very similar to fibromyalgia. i’m also going to include some neurodivergent and mental illness headcanons, but i know some people don’t consider those disabilities, but from my own experience with them, i do, so that’s why i’m adding them!

jean valjean has chronic back pain, specifically a problem with the discs in the upper spine, from his time in prison. gradually gets worse as he gets older because of lack of treatment and him triggering the pain himself by lifting the crashes cart and then marius in the sewers. in my modern aus i like to think he gets an upper back/neck and shoulder brace that he wears, and he’s a bit insecure about it so that’s why he’s always wearing big coats even in aus where he’s not being pursued by javert

javert, marius, and enjolras are autistic. javert has known most of his life but marius wasn’t diagnosed until his late teens due to lack of familial support. enjolras would have been diagnosed as a kid but he’s afab and there’s lack of diagnosis for afab children and he doesn’t get diagnosed until he’s in his 20s after doing his own research.

enjolras, grantaire, courfeyrac, and bossuet have adhd. enjolras and bossuet have more hyperactive traits, enjolras’ manifesting in his need to constantly be doing something and chronic boredom, while bossuet doesn’t display his as physical hyperactivity but more racing thoughts and an inability to slow his mind down. courfeyrac and grantaire have more attention deficit issues. they can’t focus on one topic for a while unless they go into hyperfocus or it’s a hyperfixation. grantaire has a lot of self worth issues because of his adhd because growing up he was seen as a bad student and a bad child because of his attention issues and executive dysfunction. courfeyrac got medicated really early on in childhood. enjolras did too and it becomes a bit of an issue between him and grantaire because grantaire doesn’t start medication until he’s about 24 and enjolras has been on medication for a long time and he’s kinda forgotten about how difficult it can be being unmedicated so he thinks grantaire isn’t trying enough. that changes when the pharmacy won’t refill enjolras’ medicine and he has to go a week without it. it’s a really humbling experience he apologizes to grantaire once he’s back on meds (this is based on personal experience actually… i didn’t start meds until a few months ago and i had a friend who started meds in middle school do what enjolras did and ur sucked)

joly had to get his knee joint replaced through surgery and still can’t walk properly without pain in the area so he walks with a cane. he also has an autoimmune disorder that makes him get sick really easily, as well as chronic fatigue and brain fog that makes it hard to complete daily tasks even when he has a low pain day. he also has very bad anxiety that sometimes manifests in worrying about his health excessively and vigilance about staying healthy because he knows that if he even gets a cold, it will be worse for his body than someone without a chronic illness

cosette and eponine both have c-ptsd from living with the thenardiers, and i have so much to say about this that i’m thinking about making an entirely separate post about it. just know that both of them have trauma responses, with cosette becoming very docile and a chronic people pleaser because she doesn’t want to get in trouble even though she won’t be punished like that anymore, while eponine has become hardened by her trauma and puts up walls so she doesn’t get hurt. she also gets frequent nightmares about her siblings being hurt and wakes up sweaty and almost screaming. gavroche came home late one day and eponine was on the verge of a panic attack even though it had only been half an hour

combeferre is blind in one eye and his other eye is partially damaged so he doesn’t have very good depth perception in what he can see, and he also has very limited color vision

feuilly is deaf and grantaire is HoH. feuilly’s primary form of communication is sign language, though he can lip read but not very well. all the amis know basic signs like how to ask if he wants some water/food, hellos and goodbyes, and how to sign their names. once feuilly becomes close with them, he creates signs specifically for their names, which at least in the american d/Deaf/HoH community is very special. a very close family friend of mine is HoH and he gave me a name sign when i came out as trans (it’s a quick movement of the letters R and Y up in the position where male signs are signed like “father”) grantaire is hard of hearing and has hearing aids. sometimes when he fights with enjolras he just takes out his hearing aids and just lets enjolras keep going until he realizes what’s going on.

this next one is very personal to me and is something i don’t think i’ve ever seen before, but i hc jehan with having schizoaffective disorder (bipolar type). i personally have this disorder and i have found some comfort thinking jehan has it too. they started having mood symptoms first, which started as a depressive episode and then suddenly they felt like they had been shocked into a manic episode. once the mania started they began having delusions of grandeur and the belief that they were a prophet sent to help the world. they began thinking people were after them and they heard voices from “angels” telling them what to do. they started writing poetry as a way to get the voices out of their head and onto paper. it took two years to get a diagnosis and a some very rough nights where they weren’t sleeping and would show up to meetings with delusional ideas, and they were scared. they refused to go to the hospital but needed help, so grantaire took them to the community out reach center that he goes to for alcohol addiction treatment and jehan got a psychiatrist who started them on antipsychotics and a mood stabilizer. i like to think that jehan got better quickly, just because i’ve had this disorder for a very long time and i’ve tried almost every antipsychotic out there and im not really better, so i want them to not have my experience. they were accepting of treatment pretty easily, but they did worry that their poetry wouldn’t be the same afterwards. fortunately, they channeled their frustration into poetry as opposed to writing what they were hearing and even though their poetry changed once they got on medicine, they didn’t lose their ability to write it. they’ve also learned how to have confidence in themself and the revolution without becoming delusional, which did take time because hearing enjolras’ strong ideas, it just felt like too much for a while. but the longer they’ve been stable and connected to reality, the easier it becomes to believe that yes, some things may seem improbable, but they can still happen AND some ideas are delusions and can be differentiated between the improbably ideas

bahorel has hypermobile joints and has to be careful when boxing with grantaire because he has subluxed or even fully dislocated his shoulders, elbows, and finger joints while boxing. jehan bought him some colorful finger braces and has stitched patterns into his knee and elbow braces

that’s enough for now because this is getting really long but yeah. lots of projection on my part (whoops) but what is this blog without me projecting my issues onto les mis characters? is this not what this blog is based on 😂

#les mis #les mis headcanons #les miserables #disabled headcanons #les amis #les amis de l'abc

[mental-mona]

So You've Just Been Diagnosed With a Chronic Illness - an Orientation

So you've just been diagnosed with a chronic illness, huh? Welcome to the club; there are a lot of us here! I wouldn't presume to guess what your exact illness is, but most of us have some kind of fatigue and physical and/or mental pain going on, so that seems like a safe bet. Since you're new here, I thought I'd give you some idea of what to expect and what to do as you battle your illness.

First and foremost, accept it. Life is not going to be the way it was before. You will always either have some kind of symptom or be on the lookout for signs of a flare/episode. I'm not going to tell you to "suck it up, buttercup" because that would be neither useful nor fair, but you do need to grieve your past life in your own way and then look toward your future life with this condition. It really is a process of grief - the whole idea of the 5 stages of grief is nonsense, but whatever grief looks like to you, this will be a form of it. You had this whole, lovely, capable life before, and now…what? You have no idea, and it's scary, and most likely right now life is pain. It's a tangible loss, and that fact shouldn't be denied. You need to mourn for the life you had, but you also need to accept that this is your new reality and not keep trying to do things you can't or shouldn't. It's frustrating as hell, but sometimes you'll find yourself simply unable to do something that you used to do without thinking twice about it. Feel that frustration, then accept it and learn to work with it. Your job depends on computers but your wrists are killing you? This is why wrist braces and ergonomic mouse pads exist. Can't see the screen in its default state, or its default state is so bright that it gives you a headache? This is why it's possible to mess with the brightness and contrast settings on your computer. Whatever your problem is, there's probably a workaround or something that will at least temporarily relieve the symptoms. You've got this.

Ok, so whatever you have isn't curable, it can't be treated well enough that you'll have an overall good quality of life, and/or it's degenerative? When you've reached a point where it becomes clear that basic workarounds aren't going to cut it, it's time for some planning. Do you need someone to help you with your job? Transportation? Basic tasks? Who do you think should help you, and how? Obviously you don't want to think about being debilitated, but I'm afraid you're going to have to swallow your pride here lest you find yourself stuck without a way to get to a doctor appointment, or worse, stuck in bed with no one to feed you and help you get to the bathroom without falling over. Again, the goal is to accept your illness and work with it. I'd give you more concrete suggestions, but I don't know your precise condition nor would I presume to ask.

Ok, now let's discuss how to live within your new, more limited reality until you adjust to whatever its default state ends up being. The first thing you need to do is find a doctor who specializes in whatever system of your body is a problem, preferably one with specific expertise on your condition. There may be paperwork to fill out before your initial visit - pages and pages of it - but hopefully the results will be worth it. You need to develop a working rapport with your doctor; don't forget that unless you live in an area with really crappy healthcare or you have really crappy insurance, you can always "fire" your current doc and find someone you like better. There is no good reason to put up with a doctor who doesn't listen to you and/or has a God complex if you don't absolutely have to.

Once you've found a specialist whom you feel listens to you and whom you can work with, it's time to discuss what you want to tackle first. Which symptom(s) you find most bothersome may determine which medication or therapy the doctor tries with you first. Then it's time for an unpleasantly prolonged game of "Symptom or Side Effect?" as your body keeps doing weird new things and you keep talking to your doctor. That patient information they give out with every drug they dispense at the pharmacy is your friend; at the bare minimum look at the parts about side effects so that you can at least make an educated guess in the game, and if it seems like the med is doing something nasty to you then your doctor can change it. Unfortunately there is no magic pill that will fix all of your issues with no side effects; the question is more the pro/con ratio. The med's doing wonders for one symptom but now you can't pee? Nope, sorry, that's not acceptable. (Yes, side effects can be that weird; let's just say that that example was not pulled from thin air.) The med doesn't seem to be doing anything particularly bad, but doesn't seem to be doing anything particularly good either? Also not acceptable. The med's making your illness better but now you're always tired? Up to you whether that's acceptable; if it is, great, and if not, hopefully your doctor will have something else up their sleeve.

Depending on your illness, until you and your doctor get your symptoms under control and figure out what normal looks like for you, you may unfortunately find yourself spending a lot of time in the ER as well as the doctor's office. There may be no help for it; some diseases cause emergencies when they're out of control, plus it can take time to learn to differentiate between "normal" pain and "something's really wrong" pain. If either of those is the case for you, life is going to be really hard for a while. I wish I could tell you otherwise, but there's simply no sense in sugarcoating it. You may become a bit of a hypochondriac, but your body and/or brain doing all sorts of weird new things is bound to have that effect on you. Eventually you'll learn what "normal" looks and feels like, and until then all of your "but this shouldn't be…what if…?"s are understandable.

Now let's talk about something really evil that happens to the members of this club: the societal expectation that you will either die or permanently get better, and if you claim to be able to do x one day but not another day then you're malingering. This is total malarkey and we both know it, but it apparently seems to be a common attitude toward the disabled and chronically ill. You may have gotten it so much that you've internalized it; if that's the case, mentally take a step back and remind yourself that you are not faking, you are not just looking for attention, and that your energy and ability levels vary day by day and you simply have to work with that or suffer even worse consequences later. Read about spoon theory for more on the whole energy thing, and I've posted a few other compositions (which I will soon be editing and reposting) for you to read and share with your loved ones if you so choose.

Speaking of loved ones, now is the time to refine communication with them regarding your needs. If they're micromanaging you with "Should you really be eating that? Have you taken your meds today? No, you know you can't do that. You know you need to do this symptom-relief thing" type things, that's probably getting really annoying. Remember, their hearts are in the right place, and they may even be right about whatever they're saying. However, tone and expression matter; there's a world of difference between "I seem to recall the doctor saying that you shouldn't eat that" and "Don't eat that;" between "Have you taken your meds?" and "Consider this a reminder to take your meds if you haven't yet;" between "Do this to relieve your symptoms" and an implicit "we know x works for you" along with an explicit "Have you tried x to relieve your symptoms today?" Basically, the difference is command vs. suggestion. Most people respond much better to suggestions and relatively hands-off reminders than they do to commands and reminders that seem to come with the assumption that you're a forgetful idiot. It's a thin line and a hard one to walk, but if you give them some feedback eventually your loved ones should get the hang of it. (Also, if you really are going against doctors' orders, then perhaps you actually do need to listen to the annoying things your loved ones are saying!) As for all the "Hey, I read this article about something resembling your condition; could you have the rare thing I just read about/could this new treatment I just read about help you" nuisances directed at you, they are actually expressions of love and concern. If they're really annoying then tell everyone to just buzz off, but your better bet is to smile, glance at the article or whatever to see if there really is something of value there, and if there isn't then just quietly get rid of the article and dismiss the advice.

Anyway, that pretty much concludes your orientation; if you have any more questions feel free to ask someone in the chronic illness club or consider joining a support group for your specific condition, and good luck!

#chronic condition #chronic illness #chronic illness 101 #orientation #so you've just been diagnosed #new diagnosis #long post #text post

[lalistilltrying]

So, I have fibromyalgia.

And I'm tired, yes. But I'm also tired of people with fibromyalgia. Because it sucks, yes. But it seems to me that they have been convinced that it doesn't get better. That is going to be like this the rest of their life.

I'm working on a real thin line here. No, it's not your fault, and no, I know that most of the time you're so flare up that you can't do anything. I understand. I'm like that too.

BUT, it DOES GET BETTER IF YOU PUT THE EFFORT. I swear, don't let anyone convince you otherwise. Don't let yourself convince you otherwise.

My story is like everyone else's : issues with competitive behavior from age 7, psychologist for a year. Tape A personality. Stomach problems anxiety related age 13. Bit of a breakdown age 15. But not Generalize Anxiety Disorder, not yet. Pain at 16, but still a happy go lucky girl. Tried college, first failed exam. First metal breakdown. Go back to my parents house. Diagnosed (correctly) age 18. Medicated correctly age 19. Psychologist and psychiatrist. Anxiety, depression, chronic fatigue. And this is what I learnt, age 21:

*It IS better to get medicated by a psychiatrist than a rheumatologist. There was not an ounce of inflammation in my body in my case.

*Codeine, Tylenol, Weed. Not really helpful, do more damage than good for me.

*What's helpful immediately? HOT. A hot bag, a hot bath. Maybe it doesn't get the pain away but (and I'm going to give quite a bad advice here) the "pain" of the hotness is brand new and kind of makes you forget the other ones.

*Mental Health Support. I'm lucky that nothing triggered my fibro. My family and people that I surround myself with were selected very carefully to be understanding and empathetic, I did this without realizing from a young age, because I was (am) demanding. Now it's a conscious effort.

-What happened was: Tape A personality. Difficulty to accept failure. Anxiety. Fibro. Depression. In that order. SO, I had to figuring it out backwards. Treat the immediate pain first. Depression next. Then look at yourself and realize when the flare ups really happen, then anxiety. I'm there now. I'm figuring that last one out. I still feel an incredibly amount of pain and exhaustion, and have fits of extreme anxiety like twice a week. But you have to be resilience and fight the core of all of it.

*Doctors don't know that much. Your gut feeling in this specific case can be more helpful, but do not go overboard. Don't go Worst Case Scenario. Find a good doctor for God's sake. There's always one. And work WITH him, don't let him do everything for you, and don't try to dictaminate everything yourself. Both of those are dangerous.

*Understanding yourself doesn't mean you're cured. There IS an unbalance in your brain chemistry, and that's why the meds are important. But it's a teamwork of meds + therapy + daily behavior. One falls off, and everything crumbles.

*GOOD NIGHT SLEEP. Blackout curtains, white noise, chilly atmosphere, big duvet and a bag of hot water. The goal is to go to bed early, the MEANS are to wake up early. That way, you won't feel guilty and anxious if you don't go to sleep early that day, because you WILL make it up and wake up at the exact same time as always. It's difficult if not impossible for some to do it yourself, so ask ANYBODY to help you. Maybe from months on end. But eventually your body will get used to it.

*HAPPINESS. And you are rolling your eyes right now. But listen. I know how depression for months feel like. I know how hard it is to crawl out of bed to take a piss, let alone stand for 15 minute to have a whole shower. But listen to me. YOU. ARE. ALIVE. You are NOT going to DIE FROM THIS. Nothing is happening to your physical body that can't be fixed. It's your brain. It is harder? Yes, so much more. But take my word please. If you are stubborn, if you fight everytime you can, you will eventually win.

*What you mean fight? Well, this is a long one. Bare with me: Fight does not means control. Does not means going against your body. It's understanding. It's balance, push a little bit but not too much. It's being happy for a little tiny bit. In so much pain, and darkness and sorrow. You HAVE to find this little bubbles of happiness. And it's fucking hard, because what can you do? You can't play an instrument, you can't go out with friends, you can't play videogames, or cook. You don't enjoy reading enymore, you don't enjoy movies anymore. So what? Well, let me give you this stupid premise:

AND THIS. TOO. SHALL PASS AWAY.

Pain will be a little bit tolerable, and the next day absolutely devastating. But it will pass, both those occasions. Find the good feeling of feeling better. Rejoice in it. Embrace it. And then let it go. Because it will be temporarily. Then recibe the pain, embrace it, and bare with it. Listen to what it has to say. And when you're body is ready, and you are ready, it will go too.

This is not a simple process. It could take minutes, days, moths, years. But it will eventually change. Even if it comebacks, make sure that you have change a little bit in the process, so you are not the same person anymore. Suddenly you will notice that this things will pass more quickly. That letting it go will be easier.

Let go of expectations, but not hope. Let go of drinking alcohol, let go of eating everything you want. Let go of that dream job, that meeting with your friends, your independence, your mental health. Let it go somewhere. And maybe, sometime, when you are ready, they'll come back to you. But only if you expect them standing up, strong and with open arms.

*So stop THINKING ABOUT IT ALL THE TIME, acknowledge that is there, but also think of something else. If you are smart enough, you will eventually find your bubble. Sing. Pet a puppy. Swim. Have a good laugh with someone. There are still bubbles to find. This is a part of you, a big one, but it not all there is.

*Play it an octave lower. Don't let it escalate. It hurts, yes. But at least it was better than last time. Don't lie to yourself, you won't belive it. But try to make an effort and not think the worst of it all the time, it will make you angry. And Sad. Write about it, talk about it, but tone it down. Explode every once in a while, absolutely. But let the blow fade away.

-I got it bad. I got it early. I got every symptom. I got into every diet. Every therapy. Withdraw. Headache. Feeling like I wanted to chop my legs off. But I'm alright. Because I learnt to almost, almost, enjoy the pain. The bad times. I learn to respect them. I learnt not to be so hard on myself. I found my bubbles of pure joy and happiness amidst all of this.

I don't know if it is because is my willing to live that got me here, but I don't care. I am here. I matter. And let me tell you something. One day, I realized It went away. All of it. Very low pain, very low tiredness. I was almost a normal human being for MONTHS. And then it passed. I got it all again.

But I am not the same person. I'm not a scared 16 years old. I learnt to enjoy things while being anxious. I swear is possible. I am happy, I am a happy go lucky girl again, just with more nuance underneath. Please, the only thing that this god damn desease can't take from you, it's hope. That's the only thing that you can cling to. Carry it with you. And be happy, because you are alive.

#fibromyalgia #chronic pain #fibro fog #fibrosucks #Fibro #fibroawareness #anxeity #physical fatigue

[cuttlefishkitch]

hello! i haven't talked to you before, but ron said that i could ask you for some advice on writing eds? (i'd like to know things to avoid/common things that could come up in everyday life that would be good to mention/the sort of aids and stuff they'd have maybe?/anything else you think is relevant)

Hi! Sorry this took so long, a combination of ADHD and chronic pain slowed me way the fuck down. Thank you for being patient! 

EDIT: WEIRD HEEL THINGS I FORGOT!!

So, before I get into this I should probably say I technically haven’t been diagnosed with Ehlers Danlos Syndrome (EDS for anyone reading) because it’s one of those syndromes that takes forever to get diagnosed with (it took a friend of mine’s mother over 30 years to get dxed). Many doctors, and everyone I know who does have EDS agree with me that it’s probably what causes my chronic joint pain and some of my other chronic issues. But just because three separate doctors have said “Yeah Probably” doesn’t mean I’m diagnosed!! Only a geneticist can do that!! And they had two-three year waitlists BEFORE the apocalypse happened.

I am diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Small Fiber Neuropathy, and potentially misdiagnosed with Fibromyalgia (once I get properly tested for EDS I might get undiagnosed with this because I don’t have most of the main symptoms of Fibro, but I got diagnosed with it anyway because it’s what doctors misDX you with when they don’t know what’s wrong with you and don’t want to do more tests).

All that said, I’ve done a lot of research about EDS (mainly because it’s the only thing that explains all my symptoms since doctors seem incapable of doing so), and know a few people who have either confirmed or suspected EDS, so I’ll link to some stuff, talk about the symptoms that often come with EDS, explain how the symptoms I have affect me, because just because someone’s not diagnosed doesn’t mean they aren’t having symptoms, and probs elaborate a bit about writing physical disabilities and chronic pain in general because it’s super important to me! 

So RESOURCES aka how to make sure your post never sees the light of day because you’re linking things and tumblr hates it when people give other people information!!

Youtubers! If you want to know about the day to day of living with EDS or any disability or chronic illness I super suggest finding a youtuber that makes videos about their life. My EDS favorites are

Jessica Kellgren-Fozard

Annie Elainey

Amy Lee Fisher

Websites! If you’re asking random folks on tumblr I’m assuming (and hoping) you’ve already done the basic WebMD google searches and looked over the seemingly ridiculous lists of symptoms and related conditions, so here are a few websites that are made more for people than for doctors.

The Ehlers Danlos Society

OhTWIST (That’s Why I’m So Tired)

ChronicPainPartners (the fact that they have an entire section of articles called “Dealing with Doctors” should really tell you something)

Books! If you feel like doing actual reading! I suggest reading books written by people with Ehlers Danlos, to get a feel for how they portray themselves. I’m not saying steal, but it’s probably a good point of comparison to see how your portrayal feels. (haven’t actually read these b/c my ADHD doesn’t let me read)

Ria Ruse by Morgan S. Ray (a superhero book with a disabled super MC!!)

Mysteries of Maybelle by Imani Benfell (Imani is still in high school and has already written and self-published a book cause she didn’t have enough representation for herself how cool is she!!)

Bodies in Motion by Liana Brooks (tw for pregnancy problems and miscarriages in the link, because it’s a blog post talking about integrating EDS symptoms into the story without explicitly naming them as such)

OKAY, now for some rambling about EDS SYMPTOMS!!!

Ehlers Danlos is one monster of a genetic condition in complexity and variety. There are THIRTEEN different identified types of EDS, it often comes with Mast Cell Activation Syndrome (MCAS) and/or POTS, and can lead to various other conditions like gastroparesis, chiari malformation, craniocervical instability, and/or bad teeth. So if you’re going to be writing a character with EDS consider what other comorbid conditions they might also have. I’m mainly going to be talking about Hypermobile EDS (hEDS) because it’s what I probably have and what I’m most familiar with. That said there is a lot of overlap in symptoms with the other varieties.

I started typing this section and realized I was going to have to break it down even more so we’re going to talk about Chronic Pain, Unstable Joints (Dislocations and Subluxations), Skin Things, Mobility Issues, and Other Weird Shit and how those things get addressed separately.

Gonna get the Other Weird Shit out of the way first. Because EDS is a malfunction of connective tissue it can fuck up all sorts of random things. For instance, I and many other people w/ hEDS have trouble swallowing. Shit gets stuck in my throat, I sometimes choke on and have to cough up food, and pills can be hard to swallow, which sucks cause I take A Lot Of Pills. If it doesn’t cause full-on gastroparesis it can cause IBS or other digestive problems b/c the digestive tract is mostly made of connective tissue. It can potentially cause heart problems even if they aren’t as big of a risk as in some other forms of EDS. Premature osteoarthritis is common because what you need is more joint pain. And Fatigue OH BOY THE FATIGUE. And of course the headaches, can’t forget those pesky migraines can we!

AND piezogenic papules!! I completely forgot!! Piezogenic papules are little white bumps that appear when you put weight on your heel. In some people they hurt, but in others they don’t. They’re technically tiny little herniations of fat peaking through the fascia in the heel. They were added as part of the diagnostic criteria for hEDS in 2017!

Now for Skin Things cause it’s not as big a thing in hEDS as it is in other forms. Basically, in a lot of forms of EDS, the skin is extra stretchy and extra delicate. It bruises and tears easily, people with the extreme versions of this can accidentally scratch something into an open wound if they aren’t careful. My skin is pretty soft and sensitive, I def have the typical velvety skin, and as is pretty par for the course of someone with hEDS my skin is a little stretchy, and sorta delicate. I’m not as tissue-papery as some people get, but I almost always have at least one mystery bruise or scrape b/c existing is hazardous. Most of scars are also pretty normal, unlike the extremely papery and atrophic scars (though I have a few tiny acne scars that are atrophic) that are common with other kinds of hEDS. Something that I DO have is Lots of Stretch Marks, all over my thighs, and even down to my calves. Which wouldn’t be abnormal, except for the fact that I’ve never been over 145 lbs and I’ve never been pregnant. Having a lot of stretch marks or striations in the skin without due cause happens because the structure of the skin isn’t as strong as it is in people with a normal amount of connective tissue.

I don’t have to worry as much about my skin but people that do are usually very careful with adhesives because they can irritate or tear the skin, which sucks when you need a lot of bandaids cause your darn skin won’t do its job.

Now on to the meatier stuff and since I’m mostly working backward let’s do Mobility Issues!! These can happen in loads of ways, but a lot of what causes these in people with EDS are the other two things I wanna talk about. Unstable joints lead to increased risk of injury when doing stuff people with fully functioning joints can do.

For context, I’m an ambulatory wheelchair user, meaning I can walk, but a lot of the time it’s better if use a chair. Mine is mostly for my POTS symptoms, but the fact that my legs aren’t also in absolute agony is a big plus. I use a custom manual wheelchair with a SmartDrive (b/c I’m very fucking fortunate and have good insurance) whenever I leave the house and have to be “walking” for more than a few minutes at a time. I can’t fully self-propel in a manual chair because it would be damaging to the joints in my arms and hands, but the smaller chair is easier to maneuver in less than accessible spaces (like almost everywhere). There was about a month-long span where I used a very cheap and very bulky electric chair while I was waiting on the ideal set up I have now. Before that, I also briefly used, and sometimes still use, an up-right posture cane.

People with EDS have widely varying mobility issues because of how uniquely it can manifest. My cane only gave me a little help with balance because if I used it in any prolonged capacity any pain it took away from my legs was relocated to my arms, and as an artist, my arms are more important to me!

If you’re going to write a character with EDS having mobility issues as a result of their EDS the best thing to do is to narrow down their specific needs. Are their knees complete and utter garbage but their shoulders and wrists strong? Maybe they can get away with using a cane. Can they not stand for longer than 5 minutes because of the vertigo from their POTS? Maybe they need a manual wheelchair. Would propelling themself damage their back and arm joints? An electric chair might be necessary! Plenty of people with EDS use all sorts of combinations of these aides to get around their life, consider how your character’s good and bad days would be. Do they have back up plans if they overestimate themselves? There can be a lot to manage, but don’t let it scare you off! Sometimes I try and make it into a resource management game (because I’m a game designer and that’s what I do), to make evaluating my energy and mobility needs more fun!

But now let's tackle some of the reasons those mobility aides might be needed. Unstable Joints.

Ever stepped wrong and rolled your ankle? It hurts for a few steps and then kinda fixes itself, or maybe it bothers you for the rest of the day and you put it up and ice it when you get home? When I was walking around outside my house that would happen AT LEAST once a month, usually more. Some times I’m sitting wrong and when I get up my knee isn’t a knee anymore and decides to just give out from under me. My knuckles are made of unruly popcorn and they Don’t Want To Stay Home!! Oh! And my shoulder is more often out a little out of its socket than it is fully in.

Unstable joints lead to Dislocations and Subluxations of varying intensity, and some people get them more frequently than others. Some can be severe enough to necessitate hospital visits and even surgery, some subluxations are so banal (like my fUCKING SHOULDER) that you just learn to live with the pain.

If a character is going to be in high action, combat-heavy scenarios, chances are they’re going to be popping out joints left and right. Hell, depending on the severity of their joint laxity they could be doing the same sitting at a desk. Again, it’s incredibly varied. I’d suggest setting some sort of baseline for yourself, of what a character’s joints can and can’t stand up to, and maybe do some research on which joints are most likely to pop out in general (hips and shoulders are big culprits being the wacky ball and socket motherfuckers they are). Then maybe have something pop out or hold up every so often when it shouldn’t cause hey! EDS is kinda just like that! Unpredictable!

Some ways people manage joint laxity is with braces, KT tape, and physical therapy. Braces come in many different forms, since I’m currently getting pretty much no treatment for my shitty joints I use mostly compression braces made for sporty people. It really is amazing how much a bit of tight fabric can do to keep my wrist in place.

More specialized braces often have solid parts to prevent the joints from hyper-extending (bending the wrong way) and causing further damage. If you ever see someone with what looks like diamond shaped rings around a bunch of their finger joints, chances are those are Ring Splints, and are there to keep the finger shaped like a finger. I want to get my hands on some and get some on my hands Very Badly, because my fingers hyper-extend SO MUCH when I type, and it makes my hand pain way way worse.

KT tape is another thing people often use. It’s stretchy tape you put on your skin and it basically functions kinda like a second ligament as well as reinforcing the joint and keeping the bones mostly where they’re supposed to be. The problem with this is a lot of people with EDS have very sensitive and fragile skin like I mentioned before, so KT tape can cause allergic reactions, chronic skin irritation, or just straight up take the skin with it when someone goes to remove it. Hence a lot of folks are really careful with it.

Physical Therapy is kinda the best (and only) treatment for joint laxity aside from Very Invasive and sometimes Highly Experimental surgery. It focuses on strengthening the muscles around the joints so they can do the work all those bone ropes made of body glue can’t. The problem is finding a physical therapist that 1) knows what EDS even is, 2) knows you have it, and 3) knows how to treat it without doing stuff that’ll Phucking Hurt You Worse!! Because exercising wrong with EDS can do Permanent Damage!!!

Again most folks use a combination of all of these things, or have next to no access to them b/c healthcare sucks.

Anyway, on to one of my favorite topics, Chronic Pain!! One of the reasons this post took me so long!!!

Chances are if your character has chronic pain as a result of their EDS there are gonna be some things they hate, including stairs, rain, thunderstorms, stairs, hills, uneven terrain, oh and did I mention stairs??? It’s going to vary person to person, but almost everyone I’ve met with pain from EDS has complained about their knees. For me the most debilitating pain is in my fingers and wrists. They’re by far my least stable joints but I use them constantly for stuff like drawing, typing, and sewing.

Because my joint pain is so wide spread, like most people’s with hEDS, it effects every single part of my day to day life. I can’t carry a heavy ceramic plate, open a bottle, or even use my computer without pain. It’s practically impossible for me to get comfortable in any position be it sitting or laying down, and as you can imagine that makes it hard to sleep a lot of the time. Moving too much hurts, but so does sitting still. I’m constantly taking braces on and off or cracking/stretching my joints so they pop back into place and hurt less.

Also being in pain makes everything else That Much Worse. I get tired way faster than I did before my pain was this bad (I had chronic pain for a while before actually realizing it wasn’t normal to not be able to walk down the block without feeling like your foot bones are trying to escape). My sensory issues and anxiety disorder are more easily aggravated because my base level of comfort is way worse. It fucks with my depression. And OH BOY does it make my ADHD worse because being in pain is fucking distracting as hell and makes it harder to make decisions and switch tasks. Also my ADHD often makes my other symptoms worse cause I forget to take my meds, don’t drink enough water, or can’t find my fucking braces because the item eating black-hole that comes with ADHD stole them. The intersection of mental and physical disabilities is probably a rant for another time though, so back to chronic pain.

Does it suck? Yes, undoubtedly. Is this incredibly debilitating? Of course it is, I spent the last several months unable to feed myself without assistance because there was a staircase between my room and the kitchen and I could only manage to climb it once a day. Is it overwhelming? Definitely, I’ve frequently broken down crying from a combination of pain and frustration because I’m having a bad day and there’s no relief to be found. Am I able to predict when it’s going to rain with uncanny accuracy because any change in barometric pressure makes me feel like every bone in my body is trying to kill it’s neighbors? You bet your fucking ass I am!! Does it sometimes make me irritable, angry, and occasionally dismissive of when abled people get cold or a temporary injury because the stuff they’re complaining about is my life every single day and all avenues of treatment and recovery I have could take years and still not entirely solve my issues? Yeah, and while I deserve a little extra patience I also have to be sure to check myself because I don’t want to turn into someone who’s nasty to be around. Do I sometimes need to sleep for 17 hours straight because it’s raining, I have migraine, and I’m in too much pain to be conscious? Yup, sometimes a few days in a row. Does living in constant pain mean I’m unable to do all the things I want to and does that sometimes make me wanna curl up in bed and never leave? Yeah, it happens.

But! And here’s the big important but, that’s not everything! I still write, draw, and talk to my friends!! It might take me a little longer but I get there. I’m still happy and excitable and make the time to write out five page long posts about EDS because it’s something I’m passionate about! My chronic pain doesn’t stop me. I refuse to let it. I never really wanted to go mountain climbing anyway, so I’m perfectly happy being able to make it up and down the six steps in my house, even if sometimes I have to sit and bump down them on my ass, or crawl up them like a cat. Chronic pain isn’t all I am. It isn’t a fate worse than death. It isn’t the only thing your character should talk about (though I do talk about my pain a lot cause I’m a complainer about almost everything). You can have your character be hindered by their pain, realistically they would be. You can have them seek comfort, support, and relief. Other characters can commiserate and be sympathetic, but it doesn’t mean their whole life is going to be one big pity party, that would be incredibly fucking boring. I know I’d be bored out of my mind.

All that said dealing with chronic pain, especially from EDS, is Complicated. Physical Therapy is the gold standard, but like I said before it can be a long and difficult process, and isn’t always accessible. Stabilization methods like I talked about before can help prevent pain, or reduce it by keeping bones mostly where they belong. Heat and cold help joints, relax muscles, and reduce inflammation but keeping them applied is rough and the relief doesn’t always last. Doctors prescribe anti-depressants, anti-anxiety, and sometimes even anti-epileptic medication to help manage pain, but everyone’s mileage with those varies. And I’m not at all qualified to talk in-depth about narcotics or other heavy duty pain-meds, but suffice to say the war on drugs fucked shit up for people that legit need that kind of help BIG TIME.

Now for my closer/bonus rant about EDS and Disability Writing in General!

Everyone always says write what you know, so if you really want to do disabled people justice, get to know disabled people! Make friends with disabled people, get involved with advocacy groups, consume content made by disabled creators both about disability and not! Disabilities are so fucking diverse, even EDS is such a complex disorder, and comes with so many potential co-morbidities, that practically everyone with it has a unique experience. There’s no way I can fully explain everything in a tumblr post. Hell, even if I could talk to you for hours probably couldn’t give you enough info to answer all your questions (especially since I’m still in diagnosis hell :,) ), so talk to a wide range of people with EDS and other disabilities!! I know it sounds like a lot of work but trust me, disabled people are some of the strongest, raddest, coolest, people you will ever meet that it won’t feel like it.

And don’t be afraid either, the fact that EDS and other disabilities are so wildly varied means that you have a little bit of wiggle room with your character’s experience. There’s so little disability rep out their I think people are WAY to scared to try their hand at writing it. So long as your character is a fully developed person in addition to being disabled, you give some logical thought as to how it would affect their life, and you don’t make their disability the butt of any joke it isn’t difficult to avoid ableist writing. PLEASE WRITE MORE DISABLED PEOPLE AND PEOPLE WITH CHRONIC PAIN/CHRONIC ILLNESS!!

Okay that’s it, again sorry it took so long for me to get back to you! My fingers were being little pests about it, and my ADHD (which is honestly more disabling than everything else a lot of the time lmao) was being an asshole! Hope this helps, and feel free to ask me more questions if you need clarification! It might take me a bit but I do love talking about this stuff.

#neela-chaan #ehlers danlos syndrome #EDS #hEDS #hypermobile ehlers danlos #disability #writing advice #disability writing #Chronic Pain #asks #SORRY THIS TOOK SO LONG IM JUST SLOW #also i'm sorry the formatting is such a wreck #my adhd won't let me go back and fix it #and i've already spent way too much time

[midearthwritings]

Could I please get an Lotr and The Hobbit Matchup, of you're still doing them? Thanks so much!

🌱 18 year old Woman // Bisexual // Autistic and Disabled with a bonus Anxiety Disorder

🌱 I have a litany of Chronic Illnesses including Autism, Generalized Anxiety Disorder, Depression, Dyscalculia (Dyslexia for Math), Scoliosis, Sleep Apnea, Asthma, a Growth Hormone Deficiency, Insomnia, and a very bad Overbite. I also have a condition where my right leg is physically longer than my left, which causes pain in my hip and right leg, as well as trouble walking. My usual symptoms include Fatigue, Back Pain, Executive Dysfunction (struggle to get tasks done), Difficulty breathing and talking, Very short stature, and difficulties with my balance. I also stim by pacing around in circles and talking to myself.

🌱 I have a serious fear of heights, partially because of my balance issues. It's so bad that I can't even use stairs without holding onto the railing.

🌱 I know a lot of Home Remedies and Superstitions for like no reason. For instance, did you know that Raspberry Tea helps with Menstrual Pain, or that knocking on wood invokes the protection of the tree spirit and that’s why it’s said to give you luck? I don’t know why I know that, but I do.

🌱 Winning a fight is on my bucket list, but it has to be for a good reason. I’m not one to just pick fights for the sake of fighting, and I’m actually pretty conflict-averse due to trauma, so I need to actually have a solid reason for throwing hands. But I’ve always wanted to do it for some reason.

🌱 I really like studying Witchcraft for some reason. The first spell I ever performed was a Healing Spell to help my friend who was sick with Crohn's Disease. Thirty minutes after performing the ritual, I got a text saying he felt a lot better and he was released from the hospital a couple days later, so I guess it must’ve worked. 😁

🌱 My love language is definitely gift giving. I’m pretty cheap, but I’m also an artist, so when push comes to shove I’ll just make something for someone when I like them. I pay very close attention to what people like because it gives me more ideas on how to interact with them. I’m essentially a large, flightless Crow. You were nice, so you get something shiny. But though I like giving gifts to others, I’m not very materialistic at all. I prefer to be practical when it comes to things, and I get very nervous when spending money on myself.

🌱 I’m an avid writer and am actually planning on publishing a book this summer!

🌱 I LOVE going outside and getting messy. Playing in the mud, getting soaked in the rain, I’m the type to go outside and come back home covered in dirt and twigs. It’s just really fun to me.

🌱 I've been told that I'm a very good cook, and I can bake pretty well too.

🌱 I’ve always wanted to be a really good gardener. My dream house is just covered in flowers and plants and such. I want to live in a Greenhouse, basically.

🌱 I have a habit of giggling to myself just by remembering something funny that happened, even if it was a couple years ago. I also laugh when I do something stupid, because I find my flaws and shortcomings funny for the most part. I love to laugh with people, but never at them.

🌱 I know way too much about Spirits and Fae. My favorite book is called ‘The Encyclopedia of Spirits’ and it shows you how to contact and interact with a ton of different deities and spirits, and I’m addicted to reading it. It’s the best.

🌱 I’m basically like a tiny, less-impressive Aragorn. I love travelling on foot, getting messy outside, I was kind of a Horse Girl as a kid ngl, I’ve always wanted to be a knight or king of some sort, chances are that I haven’t bathed in awhile, and I too would pine for a hot elf girl for literal years on end.

🌱 My closest friends say I give off “Dwobbit” vibes. That’s a ½ Dwarf and ½ Hobbit btw. I’m around 4’ 10” tall, I don’t shave, I love crafting and art, I live in the Mountains, I’m tomboyish but I also love gardening and can be a bit of a homebody, I love going barefoot, etc.

🌱 I really love History, Folklore, Mythology and Fairy Tales. My favorite is the Irish myth of Oisín in Tir Na Nog. Look it up if you don’t know it, it’s a fantastic story. But I also appreciate myths from all sorts of different cultures, like the myth of Annapurna in India or the tale of Princess Kaguya in Japan.

🌱 I’m an Aquarius, INFP and 4w5 if that means anything. For reference, characters who are also 4w5 INFPs include Lydia Deetz (Beetlejuice), Wirt (Otgw), Frankenstein’s Monster, Luna Lovegood (HP), Napstablook (Undertale), Erik The Phantom of the Opera, and Celeste from Animal Crossing. That kinda tells you a lot about me, doesn’t it?

🌱 I am naturally very shy and take awhile to open up to people. I also get flustered very easily and tend to avoid social interaction a lot. I’m a huge introvert, but I also really do love meeting interesting people, so I try to talk to them when I have the energy to.

🌱 I have very long Disheveled brown hair, that actually used to be blonde when I was little, so there’s a few lighter patches in there. It's essentially a fluffy mane at this point, but because of my poor hand-eye coordination I never learned how to braid it. I have really pale skin, with lots of moles, freckles and scabs. It’s also warmer out, so I almost certainly have a farmer’s tan. I have very light blue eyes and glasses.

🌱 I have a habit of seeing shadows move out of the corners of my eyes, frequently mistaking them for people or animals, but when I turn to look there’s nothing there. I’ve gotten my eyesight checked multiple times, but there’s nothing out of the ordinary, so it’s either a lack of sleep, or the Fae are getting antsy with me. Probably the former of course, but part of me would like to believe the latter too.

Sorry the description is so long, I can't wait to see my results! Thanks so much, wishing you the best!!

Hey darling! First, wow that was really long! Sorry for taking so long to make it, as I mentioned before, I'm a fucking procrastinator.

Aragorn

For LOTR, I'm pairing you up with Aragorn.

Aragorn had probably loved you for a really really long time.

But he's extremely patient and careful with you, so it took him a while to confess his love.

When he did, it was kind of overwhelming for you, and you were really doubting the whole thing. But again, he was really patient with you.

Aragorn doesn't cover you in gifts to show his love. He shows it by remembering all those little things that make you you.

The two of you can spend hours telling stories and tales to the other. It's your favorite thing to do together.

He loves that you write and always ask to read your work. Although, he never pushes you and respects you when you refuse.

He knows about every single one of your illnesses and makes sure that you always have what you need.

Bilbo Baggins

For the Hobbit, I picked Bilbo.

Bilbo loves you deeply and truly. He thinks all the things that are annoying to others are what make you the most unique being he has ever met.

He thinks listening to you tell tales is more fascinating than reading.

Most of all, he loves when you read to him the stories that you have created.

Sometimes, your illnesses are a bit complicated for him to understand, but he does his best and listens to your needs.

His favorite thing to do with you is cooking. Sometimes, you will even compete over who is the best cook. Although he admitted more than once that you were.

When you are out gardening, he sits outside with you and watches you. He thinks it's beautiful how hard you work to make his garden look so gorgeous.

He is often insecure about losing you. He is scared that he won't be able to provide you with what you need, or won't be able to show you how much he loves you.

As for you, you fear that one day he might grow tired of you.

But the communication in your relationship is great and your insecurities are even washed away by promises of eternal love.

Again, sorry for the wait! I hope you liked it!

#max matchmaker #aragorn #bilbo baggins

[sage-nebula]

((do NOT reblog))

Lately I’ve been thinking that I have Chronic Fatigue Syndrome. I’ve been tired—like, extremely so—for . . . maybe a year now? If not longer. It feels like it settled in shortly after I started my new job back in March of 2019, so in that case it’d be more like a year and nine months, but it’s hard to say for sure. I thought for a long time that it was because of my new job, because I have to wake up early in the morning for it and my delayed sleep phase disorder means that I’m running on a lower than average hours of sleep each night during the week. But lately I think it’s more than that.

See, the thing is, it doesn’t matter how much sleep I get. Even if I get the suggested nine hours a night, I’m still dozing off a little after waking up, like a couple hours later. Even if I get twelve, thirteen, or fourteen hours of sleep in a night, sure enough I’ll be dozing off again a few hours after waking up. I have no energy to do anything on the weekends. Even if I get the aforementioned thirteen hours of sleep Friday going into Saturday, on Saturday I still feel so drained that doing a load of laundry leaves me feeling completely wiped out. This causes mess to pile up in my house, because I just don’t have the energy to get it done, because I only start to feel normal by Sunday night (and even then it’s like barely normal) but then the work week starts again. I had a four day weekend this weekend thanks to the Christmas holiday, and I spent both Thursday and Friday with no energy to do anything at all. Even when I didn’t feel sleepy, I felt so drained of energy that just laying there felt like the most that I could do. Today I’ve felt a bit better, but still recuperating. Tomorrow, my last day off, is the only day I think I’ll have the energy to actually do stuff and get my house in order. But then the work week starts again, and so does the cycle anew.

And the thing is, this isn’t normal. I didn’t used to be like this. Even when I was only getting like five hours of sleep a night, I’d just need a day or so of rest and then I’d be back at 100%. But now it’s like I’m slow charging, and it’s never enough because I don’t have time for it to be enough. One or two days of sustained activity is enough so that my body wants to shut down for like a week. And it’s not sustainable! It’s very hard to live like this! I can’t keep my house clean or do basically anything else because I feel so drained. This is also why I haven’t written anything of substance in so long; even though writing isn’t a physical activity (aside from the physical activity of typing), it still takes energy, and that’s energy that I just haven’t had. My battery is constantly in the red, yellow at best, and I don’t know what to do about it.

About four or five months ago, when I told my doctor about this, he gave me Antidepressant #2 in an effort to help it. That seemed to work for like, a day or two . . . then I went right back to falling asleep at my desk at work no matter how much I slept the night before. I recently asked him to up the dosage to see if that would help, and he agreed*, but then I discovered that upping the dosage gives me tinnitus, and people on the internet say that after they kept using it despite the tinnitus it got to the point where the tinnitus never went away even after they stopped the medication, so. I’ve decided to stop taking that one and I’m going to try to wean myself off it. I’ll talk to him about that on Monday.

(*He said that he didn’t think that it would help and suggested that I exercise to get more energy instead. Of course, the fatal flaw of that plan is that I don’t have the energy needed to exercise in the first place. Plus, my legs are such shit that even things like jump rope cause my right ankle and left shin to be fucked up for days afterward. He suggested I try yoga, since that’s a low impact exercise, and I’ve got myself a mat to give it a shot, but I don’t have much optimism about it making much of a difference.)

I looked up Chronic Fatigue Syndrome online and it honestly does sound like it fits. I’m constantly exhausted, I have daily headaches (which could be down to my genetics since I do have genetic migraines but still), I often have muscle pain in various parts of my body, etc. But at the same time I’m not sure if it’s actually that or if I’m just overreacting. Like I don’t know what the threshold is, or if I’m like, I don’t know . . . what if I’m just lazy? I don’t think I am, because there are things I genuinely wish I could do that I just don’t have the energy to do. I wish I could take my dog on hikes and long walks. Pre-pandemic, I wanted to do things like go to the art museum or the science center or the zoo. I’d like to do rock climbing, provided my legs could handle that, and so on. But even before the pandemic, I never had the energy on the weekends to actually go out and do those things. I’d want to! But then I’d feel so dead that I couldn’t even get out of bed before late afternoon / evening, much less actually go out to do things. Don’t get me wrong, I do take my dog on short walks at least once a day, usually multiple times a day, because I’d never neglect her needs like that. But it’s not the same as being able to take her out to a trail and explore new areas that would surely be more interesting to her nose than just our neighborhood.

So I don’t think I’m lazy, because I want to do these things, and even smaller things, like I wish that my house could be clean and that I could make all these interior decorating renovations to it, but I just don’t have the energy. But I still don’t know if it’s actually bad enough to be considered Chronic Fatigue Syndrome. I still don’t know if I’m overreacting. What if this is a level of exhaustion that everyone has, but unlike me they can push through it? What if this is just part of Being Thirty and I’m just too weak to handle it? It’s like how I didn’t know if the pain I felt during my period was normal or not, and I still don’t actually. My gyno gave me the birth control implant to drive my periods down just because I asked for it, she didn’t actually diagnose me with any illness like endometriosis or anything like that. Sure, it felt like machetes were being shoved up into me every month to the point where I’d become incapacitated and sometimes even cry out in pain and sometimes even throw up due to how bad it was, but it could be that way for everyone, right? Maybe that’s just how it feels to have the lining of your uterus shred itself because it’s mad you didn’t get pregnant that month. How am I supposed to know?

There’s no real point to this post. It’s more that I just wanted to get my thoughts down somewhere. I don’t even know where to go from here, really. I don’t think my doctor takes me seriously enough to look into a diagnosis like this, but also I’ve never had luck finding a doctor that does take me seriously and I don’t really know where to start looking. To be fair, I do have an anxiety disorder and so I grant that my mind does find jumping to the Worst Case Scenario to be an easy one, but also the last doctor I had literally would not listen to me describe my breathing problems to her without dismissing me entirely, so. It’s been rough. Of course, even if I did get a diagnosis, it’s not like there’s a treatment, and definitely not a cure. So even if I do have CFS, what can be done about it? It’s not like knowing will solve the issues that it causes in my life. 

I don’t know. There’s no point to this. It just really sucks to be fucking physically exhausted all of the goddamn time, especially since sleep does little to help it and I hate sleeping anyway since I have nightmares at least 75% of the time, if not 85%. (It honestly feels more like 85%. Maybe even 90%. It’s very rare that I wake up having not had at least one or two bad dreams that night.) I just want to have energy. I don’t know what that’s so much to ask of my body.

But anyway, DO NOT reblog this, or I’ll just delete it so the cut leads nowhere anyway and also block you, thank you,

#just medical ramblings under the cut #//--do not reblog--//

[reliciron]

Eternal Empire After Effects

In addition to that post I made a while back about how your characters deal with either the boost in Force sensitivity or the brand new sensitivity for your smugglers/troopers/agents/bounty hunters. I want to talk about the general fucked up-ness that the Commander has to deal with post-KotET.

Like DAMN. Bare minimum, they’ve had to deal with carbonite poisoning, the general mind games of Valkorian, and then they had their mind literally broken in the last chapter. At worst, they get all that, plus taking a lightsaber to the gut. To say nothing of having to fight an impossible war for a little over a year straight with everyone’s hopes and dreams riding around on their shoulders.

A lot of the posts I’ve seen about other people’s ocs has some form of lingering effects from everything. And I just want to talk about it for a minute, cause I live for filling in the scenes we don’t see. [Take this with a grain of salt, as I’ve never played a dark side character, so my perspective will be skewed.]

Long term physical effects:

They were poisoned slowly over the course of 5 years, you can’t tell me that one little dart thing can fix that, at least not right away. This could take the form of lingering nausea, migraines, dizziness. The symptoms of heavy metal poisoning would fit well here. And I hc my consular as having some permanent nerve pain from it.

The stab on Asylum is absolute bullshit in the game. Valkorian or no, there’s no way they’d be walking out. I think I posted a pic I took before, but the stab is easily close enough for the heat transfer to damage the spine. Bone cracks and warps with heat, so you can see the problem there. The wound is almost dead on for where the stomach sits and the lungs, liver, kidney, and intestines are all in range to get badly burnt (yeah I know, alien anatomy might be different, but we’re assuming its mostly the same).

We’ve seen what a lightsaber can do to a blast door in The Phantom Menace, take that and apply it to a person, and Arcann held that blade there a loooong time.

Yes, Valkorian saves them, but I think of it more as he kept them from dying, and not, he completely stopped the blade from cooking them from the inside out. So the three days Lana mentioned are horseshit. The Gravestone’s tiny ass med-bay is absolutely not equipped to handle an injury like this.

I always figured a better way was Valkorian kept them alive long enough for Lana to threaten her way onto an appropriate station and made the doctors fix them. Even so, getting what amounts to several organ transplants, implants to bypass possible spinal chord damage, replacement ribs and vertebra, and a whole lot of skin and muscle grafts will leave your Commander pretty messed up, even with magical Star Wars tech and Force magic. And their allotted recovery time seems to be the length of the base’s construction on Odessen, so there’s no way in hell they’re really done healing by the time they have to go back out into battle.

Specific injuries aside, a year is a long time to fight more or less constantly. At least during the base game you sort of had rests between chapters. They’re gonna rack up an impressive list of injuries, alongside wear and tear like their knees and feet having trouble from the constant running and jumping. And their elbows and shoulders will break down from hours upon hours of absorbing the recoil of a gun or the constant flurry and clash of a lightsaber.

Long term mental effects:

As ugly as the physical stuff is, the mental effects are just as bad. Depending on what class they are, having the goddamn Sith Emperor riding shotgun in their head will fuck them up big time.

Classes who faced off with him more-or-less directly, like the Knight, Consular, and Warrior, are going to have the worst time of it because they KNOW what this sort of thing leads to. The warrior has seen the dead eyed puppet on Voss and knows that could be them soon. The consular had to deal with the emperors children and the First Son. They’ve seen a prominent and powerful Jedi master absolutely crumple under the power of the emperor and he wasn’t even IN there. And Knights have already experienced the emperor’s control first hand.

Not to say the others won’t have trouble with it, it’s just that the reasons will be a little less direct. The smuggler and bounty hunter are used to being their own people, not tied down to anything or accountable to anyone, and now there’s the threat that everything they have will be taken from them and there’s no amount of sneaking or shooting that will save them. Troopers built up their command from basically nothing and now they’re Republic heroes, but Valkorian now threatens the lives of everyone they’ve sworn to protect. The agent is easy, they’ve suffered mind control before, they’ve been slaves in their own body, and they’re terrified of it happening again. And inquisitors were literal slaves who clawed their way to the top, and they’d sooner die than be a slave again.

So just having that asshole there means constant stress for the whole of KotFE and KotET. Insomnia must be a given. How do you know you’ll wake up as YOU? That Valkorian won’t hollow you out in your sleep and walk around in your skin the next day? And for the Knight, Agent, and Inquisitor, I’d think panic attacks are probably a thing, even if they don’t let anyone see it.

The stab will definitely cause some trauma. Pretty sure any wound that gruesome would. And if they didn’t have nightmares before, they sure do now and I’m willing to bet that they might shy away from lightsabers for a while, which leaves an interesting dilemma considering they’re in a war with Force-users, and some of them are Force-users themselves.

Fighting a guerrilla war with an absurdly powerful adversary has to be incredibly taxing, especially for classes who’ve never had to command anything. Smugglers and Bounty Hunters are very screwed here, assuming they care about running the Alliance well. And the burden of saving the galaxy is a heavy one. I can definitely see classes who have saved the galaxy multiple times to be getting increasing bitter about always having to be the one to clean up the messes. Why are THEY the ones who always have to suffer? Why isn’t there ever a hero to save THEM when they need it?!

Agents get their own little special bit here with the bullshit that is Vaylin’s conditioning. They know exactly the kind of misery she’s going through, the powerlessness that one single phrase or word causes. I can understand that the writers couldn’t figure out or bother with a whole separate scene of the agent refusing to use the conditioning, cause then they’d have to figure out how to not have Vaylin murder them on the spot. But goddamn we could’ve at least seen them struggle with it! Maybe an extra few lines of them pleading with Vaylin because they desperately don’t want to use her control phrase. Ugh, at least behind the scenes an agent can have a break down about how they’ve become exactly like the intelligence officers who’d decided that they were too much of a liability to go without a leash they could pull. And now they’ve pulled an identical leash on Vaylin.

And then we have their mind being broken. That could be a post in and of itself. Valkorian came within a hair’s breadth of destroying them entirely, and they were so broken that they didn’t even know their own name. And in the space of 10 or so minutes, they scrape themselves together and fight a god. It’s very impressive (and I’ve got my own issues with that fight) but I don’t think you can pull yourself together that fast after being that messed up without some lingering issues.

Chronic insomnia and night terrors, full blown PTSD, panic disorders, severe anxiety; something THAT traumatic will absolutely leave marks.

And after that? They just keep going. Yeah, things calm down, but they’re still at the head of a very powerful faction now (if not ruling Zakuul), there’s no going back after this. And they’ve got a massive restoration project ahead of them as tensions continue to simmer between the Republic and Empire. The more dutiful characters must be near the end of their rope. There’s no rest, just the next fire to put out, and they continue to run themselves into the ground. And the more flighty characters are now forever shackled by the Alliance. There’s no flying off into the sunset for them. No more anonymity as a bounty hunter or smuggler. Their old life is over, whether the wanted it or not. And how can they really relax when there’s this many people looking at them for direction. They’ve become just like those asshole military leaders who they used to mock.

And for just about all of my characters, they hide it. No one can know that they’re falling apart at the seams. Either it’s about personal pride and acting unphased cause they’re just THAT good, or because they’re trying to be the leader the Alliance deserves and don’t want to disappoint or frighten them by showing just how badly they’re coping. Either way there will be a breaking point.

And even after it all comes out in the open, and they (hopefully) get the help they need. It’s never completely over. Chronic pain and fatigue, depression and anxiety, persistent insomnia; these things don’t just disappear, they’re an ongoing struggle that helps color their future actions.

I just… I really like considering things like this because it hits close to home. Seeing them struggle with some of the things I deal with makes them feel more like people. Cause god knows the writers aren’t gonna put this kind of stuff in there.

#swtor #mental health discussion #chronic pain discussion #physical injury discussion #kotet #kotfe #relicwrites

[marculees]

Epilepsy Awareness Month💜

I recently seen this post by @interstellix  who made great points about epilepsy for Epilepsy Awareness Month. It sums it up really well so I suggest you give it a read and reblog! Its nice to find another photosensitive here too because we’re such a small group within the epilepsy community. I deal with anxiety on top of my epilepsy and while they aren’t always related to each other, I don’t hear enough about the day-to-day worries of epileptics. Things that seem completely normal or fine to some people can be dangerous for me, which is why stuff like giving trigger warnings are much appreciated. But often, non-epileptics don’t know about what its like to actually live with epilepsy - not just having seizures. I want to add on some of my own experiences with a funky clickbait title, below the cut. Anyone who reads this all is a star and ily⭐️

10 Things Non-Epileptics Don’t Get (Yet)

1. That moment in movies when the character wakes up and a bunch of faces are gawking down at the camera uncomfortably. Always have someone to stay with the person having a seizure. But out of care for both that person and the people around, its best to get everyone else away. No one enjoys watching someone have a seizure - it’s scary and knowing you can’t stop it can ignite feelings of guilt or panic. For the person having the seizure, its embarrassing - they aren’t even conscious of what’s happening and for all they can remember, they were minding their own business and now they’re waking up and barely able to move their body without wincing in pain.

*TW: BODY FLUIDS* I’ve literally puked, shit and pissed myself all at the same time unconsciously in front of a room of people. I’m lucky these people were my family but it doesn’t make it any less embarrassing or upsetting knowing that everyone there saw me in such a state. A fear I had growing up was having a seizure in front of my class and the students making comments about it, thinking it was funny. In today’s age, filming seizures is something to worry about too because of how easily it can be shared to others online. Even if you aren’t an arsehole like that, try to be as respectful as possible and get everyone else to evacuate the room. At most, have three people to stay there: one person to stay close and time the seizure, one person to move furniture away and find something soft to lay under the epileptic’s head, and one person for crowd control who is keeping everyone else out and reassuring them all it’s okay.

Whatever you do, don’t make the epileptic feel bad for having a seizure. They can’t control it. Afterwards, comfort them and let them know its all over and you’ll stay with them until they feel better (unless they say they would rather be alone). Most of the time, the epileptic will be so tired and sore after their seizure that they’ll fall asleep. Let them; they need it. I’ve woken up on a couch, in my bed, the back of an ambulance or in a hospital bed and sometimes I was laying there for half an hour, sometimes a whole day. Knowing someone was there is relieving. Knowing everyone was there is shaming and it doesn’t make you feel any better when they’re all in your face afterwards too. Don’t be the camera crew.

2. Travelling alone is either a dream or everyday reality for a lot of people, but its a no-go for some of us. I was raised in a very overprotective household and still today, I don’t have a lot of freedom. Driving is usually one of the first bits of independence you get, but not for me. I’ve had seizures while out travelling because of the SUN. The sunlight flickering through trees, railings or bouncing off surfaces have triggered seizures in me where my family have had to pull over. The thought of being the one driving in such a scenario is terrifying to me, my loved ones and everyone else on the road. Driving is such a normalised thing for people my age that I’m embarrassed to bring up my own case unless someone specifically asks.

Then you have public transport. The sunlight issue is also here but this time, you’re with a bunch of strangers (see Point 1 again). Something my mum drilled into my head since I was younger was that if I ever got public transport by myself, then I could have a seizure and someone would film it and another person would rob me (and then you wonder why I have an anxiety disorder). I got my first bus by myself when I was 19 and for something so mundane to most people, it was like a little adventure to me. My mum didn’t approve but she complained about having to drive me everywhere too. While its fun to get the bus into town every now and then though, it becomes a bigger issue when travelling is a daily requirement and you aren’t able/allowed to drive yourself.

Free public transport doesn’t always include those with epilepsy, depending on which country you live in. What do you do when an employer asks if you can drive? What do you do if you have committments to go to and no one is around to drive or come with you? Or you need to explain why you’re going out, every single time, because someone else has to decide whether its worth the risk. Sunny roadtrips? Want to be a pilot? That last one isn’t a joke, by the way! I used to get a coach/private bus to college and if it was sunny, I’d pull the curtain over, wear my sunglasses and try to nonchalantly cover one eye to help. You can’t really get a curtain while driving your own car though and driving one-handed is not cool, its irresponsible.

3. Staying up all night talking with someone you love isn’t as romantic as we’d like it to be. All-nighters, i.e. lack of sleep, are a huge trigger for many epileptics. I wasn’t allowed to go to sleepovers with friends as a kid until I was 13, and at that sleepover I ended up having a seizure in the middle of the night after waking up to use the bathroom. Not to flex, but I had a seizure on the toilet. Where’s the weirdest place anyone else has had a seizure?. As a result of that, I was put back on medication after being told I was growing out of my seizures and had been med-free for one whole year. I’d love to stay up with a loved one and spend the night talking or watching movies, but I think a seizure would be more of a killjoy than going to bed early.

3. Unless you’re the paparazzi, camera flashes won’t give photosensitive epileptics seizures. Its a small gesture and I do appreciate it, but don’t worry - one small flash from a camera will not send my brain into override. Just don’t be taking photos from 5 different phones at the same time for more than one pic. Standing and waiting for people to take a photo all at the same time is awkward already because you don’t know who to look at, what to do with your hands, if you should change pose, smile or not, etc. Just take one flash photo and be done, or don’t use the flash at all if you don’t need to. Ring lights are a common thing now, by the way and I love them? Bye-bye camera flash!

I don’t blame anyone for having these types of concerns though. The only time you’re probably warned about flashing lights is when you’re about to watch a news report or awards show where there will be paparazzi and performances will be aired. Concerts are another thing that can be risky depending on the genre, size of the venue, whether its indoors or outdoors (if you’re like me and enjoy EDM music, you’ll have a very low chance of actually attending or watching anything live fdkslbjfdhb). Those things we avoid. But you taking a photo with a once-off flash will be okay, don’t worry. Seizures aren’t triggered by a single flash, but rather multiple flashes in a short period of time. They’re called Hertz and that shit hertz when its between 3-30 flashes per second. Also, fuck strobes, the Incredibles 2, Into The Spiderverse and any other movie that uses these for unnecessary effect.

4. Not everyone is diagnosed with epilepsy in their childhood and though some might grow out of it as they get older, not everyone will. I thought I had been growing out of it on two occasions (see point 3 again and point 9). Some people only get diagnosed with epilepsy later into their life. If you’re diagnosed while young, its easier to adjust your life because you’re growing up with it as your norm and its something you’ve just learned to live with. But for some people, they suddenly have to change their entire routine that they’ve established since they became an adult. Be sympathetic to those with epilepsy in their adult years, especially those who only got a diagnosis. Its not just a disability for children.

5. There are different types of seizures and one that’s commonly misunderstood is the partial seizure. These types of seizures have been mistaken for people being drunk or high (i.e. slurred speech, difficulty standing up or walking in a straight line, etc.), which has led them to getting kicked out of venues for something they have no control over. Swimming pools seem to be a common place for these bans, as well as gyms. Sometimes, these people are still somewhat aware they are having a seizure but cannot control them, which is really scary to think about. I don’t have them myself but I cannot imagine how frustrating they must be to not be taken seriously and instead as someone being high or intoxicated and then being punished for that. Alcohol is usually avoided as it can trigger seizures but when these seizures happen at social events, people can get the wrong idea. If you know someone who has these types of seizures, keep an eye on them if you’re out together. We’re usually only allowed one pint and hardly anyone gets that drunk after just one, so be aware that its likely they aren’t actually hammered but having a seizure instead.

6. Nobody likes being overworked but school, college, jobs and sport can very hard on us. Unless you’ve had a seizure, your teacher or boss probably won’t extend a deadline for you. The latter might even fire you. Chronic fatigue isn’t taken seriously. School is one big memory test in most countries, but for those with aura seizures, their ‘spacing out’ can affect how information they are actually taking in. Side-effects of meds can also make concentration and memory tough, and I hate how forgetful I can be because then I feel like I’m unreliable even though I push myself to give 110% anyway. Some activities like sports and physical education can be more draining than they would be for the average person, and sometimes I’d have to sit out during these activities because I felt an aura coming on after overexerting myself. I wish I could sit out having multiple assignments and group projects due in the same week, but college doesn’t work that way. I wish I could tell employers that I might not have that presentation done by the end of the day, but that wouldn’t go down too good either.

If you know someone who takes longer to complete tasks that might seem simple to you, ask yourself if you’ve ever considered they might have epilepsy or another chronic illness or disability. Don’t assume they’re lazy if they need to take an extra day or two to complete their final essay or have to stop their beep test earlier than the rest of the class. I didn’t know a good average for the beep test was 8-9, because no one ever told me. I pushed myself to 16 because I was scared people would think I was lazy and that I was dropping out to be with the other girls who agreed beforehand. I then ended up having an aura that almost slipped into a full seizure. I also almost had a seizure an hour before my religion exam in my Junior Cert at school. My mum even insisted I stay home and miss my State exam because of it. I still went though, took a bathroom break because I had another aura, and finished with an ‘A’ but had it been a different day, I might not have been so lucky. Its about knowing yourself and your limits, but we aren’t always informed that they should exist and then you end up doing stupid things like me that could hurt you. Likewise, its important to be understanding that not everyone can work at the same pace as you. It doesn’t make the quality of our work any less even if we need more time or energy to do it.

7. Side-effects aren’t always in the short-term. My own meds are advised to not be taken long-term as they weaken my bones over time. I’m 21 now and I’ve been on meds since I was 8. I wanted to reduce my dosage and eventually become med-free last year but the neurologist told me I still had brain activity and needed to stick with them. In fact, they almost ended up prescribing me more even after I had told them I was five years seizure-free. Why? See point 9. I’m lucky though because I’ve only been on one type of med. Some people can take years to find what works and their neurologists will prescribe them all sorts and leave them with awful side effects. Only last year I was chatting with a woman whose meds had caused sudden depression and fits of anger in her after she had been diagnosed and given her prescriptions. She eventually got brain surgery instead.

8. If you have a uterus and/or want to have children, do your research and a LOT of it. Birth control is usually a tough decision to make and often times, it can feel like you have no choice. Its so important to check with multiple neurologists and doctors which form of birth control is the best for you with your medication, because even the slightest new introduction to your meds box can have unpleasant side-effects. With the current medication I’m on, I can’t take the pill unless I want to increase my current dosage of meds as the pairing cancel each other and make me more vulnerable to seizures and other side-effects. I’m not pregnant and yet I have to take daily folic acid supplements because my meds cancel that out too. Every month or two, I will faint or almost faint on the first day of my period and I’m more vulnerable to having a seizure during that time. If I ever want to give birth, my children can possibly inherit my condition or be stuck taking care of me when I should be caring for them. I wouldn’t wish that upon anyone.

This is not to say that people with epilepsy can’t have fulfilling sex lives or raise families. But we just do it at a greater risk that even some neurologists aren’t aware of. I had to tell my neurologist last year why I didn’t want to go on the pill because HE didn’t know it interacted negatively with my meds. I’ve known women who were prescribed the pill or meds BY A PROFESSIONAL that interacted negatively with each other and gave them seizures as a result. It takes ‘find the right method for you’ to a whole new level. If your partner has epilepsy, its so important to discuss birth control and take their condition into consideration. I hear men telling their girlfriends to go on the pill so that they don’t have to use a condom, which is really selfish for a start and also disregards other forms of birth control. Do your research but let them and their own trusted neurologist decide which form is best. You should still be using a condom to protect yourselves anyway! And if you and your epileptic partner decide you would like to have children, do the same process and make sure that they are in a safe position to do so.

9. *TW: DEATH* Threatening (even ‘jokingly’) to trigger a seizure in someone is playing with that person’s life. SUDEP (Sudden Unexpected Death in Epilepsy) affects roughly 1 in 1000 people each year. Even if that person doesn’t die after their seizure, you may have just broken a record they set for days, months or YEARS without a seizure. You just revoked their driving license and they weren’t even behind a wheel. You just prescribed them new doses of medication without any years of medical school.

Growing up, I had countless incidences where classmates would joke about making me have a seizure. If the teacher left the room for anything, the first thing they would do is run up to the lightswitch and fuck around with it. In secondary school, I stopped using the bathroom at lunch because one of the girls thought it was funny to deliberately flick the lights on and off anytime I was inside. She would snicker and call out to me while I was in the stall, asking if it could make me have a seizure. Even after saying yes, she continued to do it. If I did end up having a seizure in that bathroom, god knows what could have happened. I had a seizure in a bathroom before and was lucky I only hurt my jaw as my head slammed against the wall. Others aren’t so lucky. Injuries from seizures can be brutal, just like OP said. Yeah, you might not kill them by triggering a seizure, but what injuries do they have to deal with after?

Imagine playing a game for years and you spent ages collecting all the items, defeating every boss and proudly showing off the trophies you won. Now imagine someone suddenly pulls the cord as you’re playing; your game freezes, the screen shuts to black and when you try to frantically start it up again and see where you had remembered to last save, it says your data is corrupted and deletes everything without your permission. It doesn’t matter where or when you saved. You have to start your progress all over again. You can try memorise the strategies from before but the game switches things up and suddenly you’re hit with a difficulty spike out of nowhere. The person who joked around and pulled the plug doesn’t have to do anything. And if they wanted to, they could do the same thing again and again. Don’t be that person. Be their Player 2 and help them. If they need to go into a dungeon but they’re scared to be alone, offer to cover their back. If their health is low, find them a safe spot and let them heal. The same goes for appointments and seizures. Its not a multiplayer game by default and while they can power through solo, that doesn’t mean they don’t need help if they’re ever stuck.

10. To end on a more positive note, there are lots of successful people out who have/had epilepsy and you probably never even knew. Cameron Boyce’s passing brought attention to SUDEP and celebrities with epilepsy but did you also know about these people and their own cases and seizures?

Prince

Elton John

Lewis Carroll

Danny Glover

Lil Wayne

Neil Young

Hugo Weaving

Charles Dickens

Julius Caesar

Vincent Van Gogh

Theodore Roosevelt

Adam Horovitz

Susan Boyle

Rick Harrison (the Pawn Stars guy!)

And some who are not confirmed (due to medical practices of the time) but are suggested as a result of numerous seizures:

Leonardo da Vinci

Michelangelo

Edgar Allen Poe

Agatha Christie

Socrates

Napoleon Bonaparte

Aristotle

Alexander the Great

Epileptics are humans, normal people just like you. And like you, they’re capable of great things too. If you think about making a crude comment to someone with epilepsy, think about these people and ask yourself if you would say the same things to them. 

If you read all of this, comment with a ⭐️ and please reblog to spread awareness. Whenever we talk about epilepsy, we start and stop the conversation at seizures. Its good to bring awareness to the other things too because its something that affects every part of our lives. Its an invisible disability but that doesn’t mean we are hidden from the disability community and discussion!

#actually epileptic #epilepsy awareness month #epilepticon2020 #just epilepsy things